Could you please .....? ( another one GET UK """study"" ", but on childs/pre-adolescents)

[funkyqueen]

Hi there !

Could some of you, guys, (with an English better than mine, and sufficient " energy"), can writte to this team, trying to learn them ( with links of studys, and particulary, the exciting last one - Naviaux &Al, about hypométabolisme ), how much it will be harmfull for those childrens/ pre-adolescents, to be involved in their " " " study " " " ? ( another f*cking GET " study" .......... grrr !!!)

(link to contact them at the end of this 1rst link )
Thanks for them ! ( 100 childs will be concerned )

http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/magenta-trial/

http://www.ncbi.nlm.nih.gov/pubmed/?term=MAGENTA CFS/ME

 

[JaimeS]

Actually, something has been in the works on this for some time now, but it requires serious strategizing.

This represents months of work on the part of a large group of hardworking individuals, [having edited this to be vaguer, sorry... strategy again!]

The effort is very close to completion! Because so many are working together, waiting for input / feedback from important parties sometimes takes precedence over our sense of urgency. Jumping the gun can result in petitions that are just 'feel good' -- not addressed to the right person or with the right input (i.e. crafting an ask that can actually be accomplished by the party you address) that have little impact.

This is absolutely something that can kindle righteous anger and it does in me, too. But Credible Hulk wants credibility.

 

[slysaint]

Credible Hulk wants credibility

 

[JaimeS]

And here we go, ladies and gents. Fasten your seatbelts.

http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/

And do read FAQ on main site (www.stopGET.org) before describing how it would have been done differently/better if only YOU had been there to advise, lol.

I love my community, and I also know my community! Done w/advice from many realms. Worked on by a small, dedicated, very ill team with advice from patients and non-patients alike, with backgrounds in gov't, law, statistics, PACE in specific, and research in general. Please be respectful of the effort that went into this, which was enormous.

POST IT EVERYWHERE. Really we gain the most exposure when everyone who decides to sign tweets or Facebooks their signature. If social media exhausts you, please consider emailing the link to others.

Thank you so much for your support -- it means the world.

 

[PennyIA]

Signed & will be posted on facebook when I get off of work.

What a well-worded petition!

I can't think you enough for all your (and the team's) hard work!!!!

 

[Countrygirl]

Thanks @JaimeS . Signed and shared on Facebook.